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Author: Denise Higgins

Rare Disease Day – 28 February

Posted on February 10, 2023February 10, 2023 by Denise Higgins

The last day of February is the day designated to focus our attention on rare disease. The global prevalence of alkaptonuria is 1 per 100,000 to 250,000. The prevalence of the disease in the United States is 1 case in one million population (1). According to the AKU Society and the DevelopAKUre Consortium, the number of alkaptonuria patients…

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10th Anniversary of the National Alkaptonuria Centre UK

Posted on July 18, 2022February 10, 2023 by Denise Higgins

Shared by The AKU Society, UK June 2022 marked the 10th anniversary of the Robert Gregory National Alkaptonuria Centre (NAC) offering life-changing support and treatment to AKU patients. First commissioned by NHS Highly Specialised Services in April 2012, the NAC opened its door to patients for the first time in June 2012, and has now…

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AKU: A Rare Story of Hope

Posted on December 7, 2021December 7, 2021 by Denise Higgins
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Nitisinone approved by the European Commission!

Posted on October 30, 2020 by Denise Higgins

The AKU Society in the UK is incredibly proud to announce that the European Commission (EC) has extended the existing marketing authorisation for nitisinone use in AKU. This is the culmination of years of hard work and dedication. “We hope this decision means that patients across Europe will now begin to be able to access nitisinone. With this…

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Sonia 2 Nitisinone Trial Results

Posted on July 24, 2019 by Denise Higgins

SONIA 2 and DevelopAKUre – Results We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum) announced that they are going to apply to the European Medicines Agency (EMA) for market authorisation…

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RECENT POSTS

  • FDA has approved HARLIKU (nitisinone) Tablets
  • The History of AKU
  • AKU Patient Registry
  • Rare Disease Day – 28 February
  • 10th Anniversary of the National Alkaptonuria Centre UK

[See All Posts]

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